Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I typed this all out yesterday and lost it...ugh. I have assumed I had RA for a long time. I have had OA for over 20 years and Fibro for at least a decade. So hard to tell which pain is which. I've been suggesting to my docs that since I do have a family Hx of Ra plus telltale signs that maybe we should think about testing. Once I got tested several years back my RA factor was 19. That rheumotologist said "that doesn't mean you have it; since you have endometriosis, migraines and fibro that's probably why it's positive" (and I also have HepC btw)
Lots of crap that I have! Lots of pain and fatigue!
I am at my lowest point in life. I'm 52 now......my hands and feet have been killing me and now my one hand anyway is showing nodules etc, so I told my PCP , she tested me and my RA factor is now 64; and my ESR-Wintrobe (is that a SED rate??) is 36.
my ANA screen is negative I think.....does that mean I don't have Lupus? I don't know. I have to wait a month for my appt. with my new RA specialist. I talked my PCP into giving me something in the meantime so she gave me a week's worth of prednisone starting on day 1 with 30 mg , then day 2, 25 mg, and 5 mg less each day for a week.
Plus she gave me indomethacin. I am sort of afraid of what that will do to my stomach......any input or advice, thoughts on that???
I had been on prednisone a few years back for an allegic reaction and was amazed at how pain-free I was!!! Now, I know why!
I want to feel like that again! What is considered a high starting dose of prednisone? I have an anxiety issue to begin with so I don't want to be going all ape sh__ from nerves.
thanks for any and all advice!
Lots of crap that I have! Lots of pain and fatigue!
I am at my lowest point in life. I'm 52 now......my hands and feet have been killing me and now my one hand anyway is showing nodules etc, so I told my PCP , she tested me and my RA factor is now 64; and my ESR-Wintrobe (is that a SED rate??) is 36.
my ANA screen is negative I think.....does that mean I don't have Lupus? I don't know. I have to wait a month for my appt. with my new RA specialist. I talked my PCP into giving me something in the meantime so she gave me a week's worth of prednisone starting on day 1 with 30 mg , then day 2, 25 mg, and 5 mg less each day for a week.
Plus she gave me indomethacin. I am sort of afraid of what that will do to my stomach......any input or advice, thoughts on that???
I had been on prednisone a few years back for an allegic reaction and was amazed at how pain-free I was!!! Now, I know why!
I want to feel like that again! What is considered a high starting dose of prednisone? I have an anxiety issue to begin with so I don't want to be going all ape sh__ from nerves.
thanks for any and all advice!
sandy
Prednisone doses can be as high as 60 mg a day for a short period of time--but it seems like most people on this site are on 10 - 20 mg and then taper off. I started at 10 mg a month ago, then upped it slowly to 20 mg, and at that level my doctor backed me off it--so I'm at .5 mg for a week then getting off it. For some reason it never kicked in at 20 mg. It is an amazing drug and can bring you almost instant relief when you have the right dose.
I was put on prednisone for asthma and the pain also cleared up. That is when I knew something was really wrong. I am severe, but I think 25 is the highest my ESR has ever been.
The cure is not prednisone. It is a stop gap measure till you get on the meds that actually suppress the disease. Don't even calculate you highest possible dosage. Demand DMARDS and then a biologic if necessary. You will get your life back, as many here will testify.
If I told you the side effects of prednisone, you would pass out. I just came off nearly 4 months on it while waiting for Rituxan to kick in after Sulfasalazine turned out to be deadly - I am now allergic to aspirin and derivatives.
On the outside, I gained 20 lbs. I hate to think of what it did to the bone density and other things. Get better meds, and make prednisone something you avoid like the plague and you will be much happier. And don't hesitate to get those anti-anxieties or anti-depressants during this phase of your life.
And welcome, too. Not trying to scare you, but give you some hope in that there are some really good new meds out there. Prednisone is not one of them. (Hoping you are not med resistant, but give it a good try at the meds, first)
Lynne
As Angela said, prednisone is a bridging treatment til others such as methotrexate or Plaquenil or sulfasalazine kick in to modulate your immune system. I am also on Diclofenac (same drug class as indomethacin). Take with food/milk. If you get any gastritis or heartburn, can take a Prilosec, but I have rarely had to do that.
As far as anxiety, it is a normal reaction to what is happening w/ your body and this diagnosis- I freaked out when found out I had RA. As far as labs: your rheumatoid factor can be negative (called seronegative) as well as normal sed rate, and still have RA. I have not had an abnormal sed rate either. A positive ANA does not mean you have lupus - can be positive in a number of things including RA. But a diagnosis of RA is not made from labs alone - it includes a careful clinical evaluation by a rheumatologist, who will examine all of your joints one by one, as well as possible xrays and other tests. Hopefully that will bring you the answers you need as well as get you on a proper treatment path to control the illness. In the meantime, take care of yourself - and hugs!
Yea like I said when I was on prednisone for a few weeks or so from a seperate issue and felt my pain so much gone, I too, knew something was up and could not understand why I can't just be on that always.
I am scared to ask this but after seeing so many tv ads for RA drugs (oh and btw I actually do know about most of the pred. side effects so that isn't a surprise to me) but those tv ads for the RA meds are scaring the living crap out of me and , is the fact that I have liver disease too, going to make this more of a challenge??
Don't those meds say don't take with liver disease ?
God, I really don't want to know on one hand...
Well it sounds like I have yet another immune system disease that is confusing to diagnose with lab work. My endometriosis was that way too; it too is one of those things that the doc can find you with loads of it and you might feel fine or vice versa.
Um also, even though I did ask the rheumi's staff member , is he going to be able to detect my history ok if I've had the prednisone short term before meeting him?
She said "yes, he'll go by your history" but just thought I'd ask you all.
Bless you all.
Prednisone is the drug we hate but love for the relief it can give, short-term. If you can't see a Rheumatologist for a month, I would ask your PCP again for Prednisone until then.
As Angela said, keep taking your anxiety medication. My hands, feet and lower leg are where RA attacks me most, too.
I was dx in Dec, 2009 and still trying to find the right "cocktail" of meds so be prepared that it may take quite a while.
Hope you are able to get some relief soon.
Hugs